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  1. Article ; Online: Knowledge, attitudes and beliefs about paediatric palliative care.

    Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Gaczkowska, Inez / Harding, Richard

    Annals of palliative medicine

    2023  Volume 12, Issue 1, Page(s) 10–12

    Language English
    Publishing date 2023-01-10
    Publishing country China
    Document type Editorial
    ZDB-ID 2828544-X
    ISSN 2224-5839 ; 2224-5839
    ISSN (online) 2224-5839
    ISSN 2224-5839
    DOI 10.21037/apm-22-1326
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  2. Article ; Online: Implementation of child-centred outcome measures in routine paediatric healthcare practice: a systematic review.

    Scott, Hannah May / Braybrook, Debbie / Harðardóttir, Daney / Ellis-Smith, Clare / Harding, Richard

    Health and quality of life outcomes

    2023  Volume 21, Issue 1, Page(s) 63

    Abstract: Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and ... ...

    Abstract Background: Person-centred outcome measures (PCOMs) are commonly used in routine adult healthcare to measure and improve outcomes, but less attention has been paid to PCOMs in children's services. The aim of this systematic review is to identify and synthesise existing evidence of the determinants, strategies, and mechanisms that influence the implementation of PCOMs into paediatric healthcare practice.
    Methods: The review was conducted and reported in accordance with PRISMA guidelines. Databased searched included CINAHL, Embase, Medline, and PsycInfo. Google scholar was also searched for grey literature on 25
    Results: We retained 69 studies, conducted across primary (n = 14), secondary (n = 13), tertiary (n = 37), and community (n = 8) healthcare settings, including both child self-report (n = 46) and parent-proxy (n = 47) measures. The most frequently reported barriers to measure implementation included staff lack of knowledge about how the measure may improve care and outcomes; the complexity of using and implementing the measure; and a lack of resources to support implementation and its continued use including funding and staff. The most frequently reported facilitators of implementation and continued use include educating and training staff and families on: how to implement and use the measure; the advantages of using PCOMs over current practice; and the benefit their use has on patient care and outcomes. The resulting logic model presents the mechanisms through which strategies can reduce the barriers to implementation and support the use of PCOMs in practice.
    Conclusions: These findings can be used to support the development of context-specific implementation plans through a combination of existing strategies. This will enable the implementation of PCOMs into routine paediatric healthcare practice to empower settings to better identify and improve child-centred outcomes.
    Trial registration: Prospero CRD 42022330013.
    MeSH term(s) Adult ; Humans ; Child ; Quality of Life ; Delivery of Health Care
    Language English
    Publishing date 2023-07-03
    Publishing country England
    Document type Systematic Review ; Journal Article ; Review
    ZDB-ID 2098765-1
    ISSN 1477-7525 ; 1477-7525
    ISSN (online) 1477-7525
    ISSN 1477-7525
    DOI 10.1186/s12955-023-02143-9
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  3. Article ; Online: What are the barriers and facilitators to advance care planning with older people in long-term care facilities? A qualitative study.

    Zhou, Yuxin / Wang, Ariel / Braybrook, Debbie / Ellis-Smith, Clare / Feng, Haixia / Gong, Ni / Zhou, Zhi / Harding, Richard

    Journal of clinical nursing

    2024  

    Abstract: Aim: To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities.: Design: A qualitative descriptive design.: Methods: We conducted ... ...

    Abstract Aim: To explore the views and preferences for advance care planning from the perspectives of residents, family members and healthcare professionals in long-term care facilities.
    Design: A qualitative descriptive design.
    Methods: We conducted semi-structured interviews with 12 residents of long-term care facilities, 10 family members and 14 healthcare professionals. Data were analysed using reflexive thematic analysis. The social ecological model was used to develop implementation recommendations.
    Results: We constructed a conceptual model of barriers and facilitators to advance care planning in long-term care facilities, drawing upon four dominant themes from the qualitative analysis: (1) The absence of discourse on end-of-life care: a lack of cultural climate to talk about death, the unspoken agreement to avoid conversations about death, and poor awareness of palliative care may hinder advance care planning initiation; (2) Relational decision-making process is a dual factor affecting advance care planning engagement; (3) Low trust and 'unsafe' cultures: a lack of honest information sharing, risks of violating social expectations and damaging social relationships, and risks of legal consequences may hinder willingness to engage in advance care planning; (4) Meeting and respecting residents' psychosocial needs: these can be addressed by readiness assessment, initiating advance care planning in an informal and equal manner and involving social workers.
    Conclusion: Our findings show that residents' voices were not being heard. It is necessary to identify residents' spontaneous conversation triggers, articulate the value of advance care planning in light of the family's values and preferences, and respect residents' psychosocial needs to promote advance care planning in long-term care facilities. Advance care planning may alleviate the decision-making burden of offspring in nuclear families.
    Implications for clinical practice: The evidence-based recommendations in this study will inform the implementation of context-specific advance care planning in Asia-Pacific regions.
    Patient and public contribution: Patients and caregivers contributed to the interview pilot and data collection.
    Language English
    Publishing date 2024-02-20
    Publishing country England
    Document type Journal Article
    ZDB-ID 1159483-4
    ISSN 1365-2702 ; 0962-1067 ; 1752-9816
    ISSN (online) 1365-2702
    ISSN 0962-1067 ; 1752-9816
    DOI 10.1111/jocn.17071
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  4. Article ; Online: Reflective insights from developing a palliative care children and young people's advisory group.

    Roach, Anna / Braybrook, Debbie / Marshall, Steve

    Palliative medicine

    2021  Volume 35, Issue 3, Page(s) 621–624

    Abstract: Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from ...

    Abstract Background: The importance of actively involving patient and public members throughout the different stages of palliative care and health research projects is widely acknowledged, however patient and public involvement work rarely considers insight from children and young people. Although this is becoming increasingly recognised in other areas of research, there is currently no structured guidance on how to best involve children and young people in palliative care research.
    Aim: To plan and deliver a Young People's Advisory Group in palliative care and health research at a secondary school.
    Findings: Attending an after-school 'Health and Social Research Methods Club' for 11 weeks benefitted children and researchers. Children were taught about data collection methods, data analysis and ethics in health research and used these skills to provide valuable feedback which has been implemented in current palliative care research projects. Children took part in considered discussions around palliative care topics and enjoyed attending the group.
    Conclusion: This project has equipped researchers with skills and provided a structured template for future Young People's Advisory Groups, ensuring the unique voices of children and young people are considered and valued in future palliative care research.
    MeSH term(s) Adolescent ; Child ; Hospice and Palliative Care Nursing ; Humans ; Palliative Care ; Research Design
    Language English
    Publishing date 2021-01-12
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/0269216320976035
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  5. Article ; Online: What contributes to promote sexual health in cancer palliative care? A realist review.

    Roxane, Donz / Bruno, Russia / Cécile, Barbaret / Braybrook, Debbie / Elise, Perceau-Chambard / Thibaut, Reverdy / Guillaume, Economos

    Sexual medicine reviews

    2024  

    Abstract: Introduction: Sexuality is an important determinant of the overall health of a population and remains so at the end of life and in patients with advanced cancers. Despite the abundant literature on sexuality and intimacy, these topics have been rarely ... ...

    Abstract Introduction: Sexuality is an important determinant of the overall health of a population and remains so at the end of life and in patients with advanced cancers. Despite the abundant literature on sexuality and intimacy, these topics have been rarely discussed in the context of cancer palliative care, and very few interventions to promote sexual health in patients undergoing cancer palliative care have been explored.
    Objectives: In this study we sought to identify which factors and mechanisms contribute to promoting sexual health in cancer palliative care.
    Methods: A realist review was performed according to the guidelines of the realist and meta-narrative evidence synthesis method guidelines. Articles published between January 2010 and June 2021 were searched in 4 databases. Records were screened for their relevance regarding a predefined list of context-mechanism-outcome (CMO) configurations. Abstracts were independently screened by 2 authors before the data were extracted from the full-text articles selected for inclusion. With the use of abductive and retroductive reasoning techniques, each article was examined for evidence of its contribution to one of the CMO configurations, which could be refined when relevant. The data were summarized according to the final CMO configurations.
    Results: Of the 2056 articles identified, 38 articles were included in the review. The data reported in these articles contributed to 7 CMO hypotheses: (1) improving communication skills, (2) healthcare provider training, (3) reorganizing the patient environment in care settings or at home, (4) managing sexual symptoms and also general symptoms, (5 and 6) patient-centered counseling or couple counseling, and (7) lifting the taboo.
    Conclusions: The findings reported here highlight various ways to improve sexual health for patients in cancer palliative care but are limited to genital cancers. Further research should consider all types of cancer rather than being restricted to genital cancers.
    Language English
    Publishing date 2024-03-20
    Publishing country Netherlands
    Document type Journal Article
    ZDB-ID 2722257-3
    ISSN 2050-0521 ; 2050-0513
    ISSN (online) 2050-0521
    ISSN 2050-0513
    DOI 10.1093/sxmrev/qeae008
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  6. Article ; Online: Mechanisms and contextual influences on the implementation of advance care planning for older people in long-term care facilities: A realist review.

    Zhou, Yuxin / Wang, Ariel / Ellis-Smith, Clare / Braybrook, Debbie / Harding, Richard

    International journal of nursing studies

    2022  Volume 133, Page(s) 104277

    Abstract: Background: Older people in long-term care facilities face clinical uncertainty and unpredictable decline. Advance care planning enables older people to identify preferences and wishes for future treatment and care before any loss of capacity. However, ... ...

    Abstract Background: Older people in long-term care facilities face clinical uncertainty and unpredictable decline. Advance care planning enables older people to identify preferences and wishes for future treatment and care before any loss of capacity. However, it is unclear how, why and under what circumstances the implementation of advance care planning for older people can be normalised into routine practice within long-term care facilities.
    Objective: To identify and explain mechanisms and contextual factors that underpin the implementation of advance care planning for older people in long-term care facilities.
    Design: Realist review.
    Setting(s): Long-term care facilities.
    Methods: Consistent with realist review methodology, we developed the initial programme theory by scoping reviews, engaging UK and China stakeholders and utilising the Normalisation Process Theory. MEDLINE, EMBASE, CINAHL, PsycINFO, Web of Science, and Scopus were subsequently searched from 01/01/1990 to 11/06/2021. Inductive and deductive coding was used to generate context-mechanism-outcome configurations, which were iteratively tested to refine the programme theory.
    Results: 5459 records were identified, and 48 were retained for final synthesis. Seven context-mechanism-outcome configurations were identified: (1) carry out sensitive conversation gradually in a nonthreatening way; (2) identify 'a window of opportunity'; (3) deliver sustainable and available training; (4) build a collaborative and multidisciplinary network; (5) conduct collaborative negotiation to achieve shared decision-making; (6) secure active leadership buy-in; (7) keep conversation and documentation on track. A logic model was developed to conceptualise the causal pathways between the contexts, mechanisms, and outcomes.
    Conclusions: Normalising conversations about death is paramount to mainstreaming advance care planning implementation in long-term care facilities. The key to achieving this is older people, family members and staff have a shared understanding of the aims, values, and potential benefits of advance care planning. Advance care planning should be introduced at a time that is important to older people and families, rather than being process-driven. Nurse facilitators play a vital role in ensuring older people's voices are heard and in building bridges between participants in advance care planning. The findings of this study inform the appropriate development and evaluation of advance care planning interventions for older people in long-term care facilities. Further research is needed to explore mechanisms that underpin the implementation of advance care planning in Asian countries.
    Registration: This review is registered with the International Prospective Register of Systematic Reviews (CRD42021214317).
    MeSH term(s) Advance Care Planning ; Aged ; Clinical Decision-Making ; Humans ; Long-Term Care ; Systematic Reviews as Topic ; Uncertainty
    Language English
    Publishing date 2022-04-30
    Publishing country England
    Document type Journal Article ; Review
    ZDB-ID 80148-3
    ISSN 1873-491X ; 0020-7489
    ISSN (online) 1873-491X
    ISSN 0020-7489
    DOI 10.1016/j.ijnurstu.2022.104277
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  7. Article ; Online: Between loss and restoration: The role of liminality in advancing theories of grief and bereavement.

    Bristowe, Katherine / Timmins, Liadh / Pitman, Alexandra / Braybrook, Debbie / Marshall, Steve / Johnson, Katherine / King, Michael / Roach, Anna / Yi, Deokhee / Almack, Kathryn / Day, Elizabeth / Clift, Paul / Rose, Ruth / Harding, Richard

    Social science & medicine (1982)

    2024  Volume 344, Page(s) 116616

    Abstract: A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been ... ...

    Abstract A recent national survey of bereaved partners found high levels of complicated grief and psychological distress, with evidence that loneliness and isolation may contribute to these outcomes. However, the mechanisms of action for this have not been explored. To advance grief theory this paper reports analysis of the survey free-text data to examine the relationship between social support and emotional responses to bereavement. Individuals bereaved of a civil partner or spouse 6-10 months previously were identified through death registration data. 569/1945 (29 %) completed surveys were received. Of those, 311 participants (55 %) provided responses to two free-text questions which asked about their 'feelings since the death of their partner or spouse', and 'about the support around' them. Data were analysed using corpus-assisted discourse analysis and the discourse dynamics approach for figurative language. Participants described diverse emotional responses to the bereavement (e.g. sadness, anger, denial, acceptance), and the value of formal and informal bereavement support. Although many of the experiences described are accounted for in existing grief theory, some participants described a liminal experience not recognised within these theories. They felt trapped, unable to engage with loss or restoration, and unable to move forward as their planned future no longer existed. They sought out 'communitas' (solidarity in experiences), but often found support from their social networks had diminished. Metaphors were used to describe this liminality, with partner grief expressed as a dark agentic force, a monster, an abyss, and as water. The findings of this study offer original insights into experiences and trajectories of bereavement, and our understandings of prolonged or complicated grief. A novel model 'Between Loss and Restoration' is presented to include these experiences. Recognition of the place for liminality within the spectrum of grief experiences could enhance grief literacy and improve formal and informal bereavement support provision.
    MeSH term(s) Humans ; Bereavement ; Grief ; Anger ; Loneliness ; Language
    Language English
    Publishing date 2024-01-23
    Publishing country England
    Document type Journal Article
    ZDB-ID 4766-1
    ISSN 1873-5347 ; 0037-7856 ; 0277-9536
    ISSN (online) 1873-5347
    ISSN 0037-7856 ; 0277-9536
    DOI 10.1016/j.socscimed.2024.116616
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  8. Article ; Online: 'My life is a mess but I cope': An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition.

    Bristowe, Katherine / Braybrook, Debbie / Scott, Hannah M / Coombes, Lucy / Harðardóttir, Daney / Roach, Anna / Ellis-Smith, Clare / Bluebond-Langner, Myra / Fraser, Lorna / Downing, Julia / Murtagh, Fliss / Harding, Richard

    Palliative medicine

    2024  Volume 38, Issue 3, Page(s) 379–388

    Abstract: Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to ...

    Abstract Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child.
    Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.
    Design: Positioned within a
    Setting/participants: A total of 26 children and young people aged 5-17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations.
    Results: The language children and young people use positions them as 'experts in their condition'. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a 'series of (functional and social) losses', which single them out from their peers as 'the sick one'. Older children and young people also incorporate figurative language to expand their descriptions.
    Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one's language towards theirs, may enable more child-centred discussions. Expanding discussions about 'what matters most' with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.
    MeSH term(s) Humans ; Child ; Adolescent ; Qualitative Research ; Palliative Care/psychology ; Hospice Care ; Language ; Communication
    Language English
    Publishing date 2024-03-04
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241233977
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  9. Article ; Online: What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders.

    Scott, Hannah May / Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Roach, Anna / Bristowe, Katherine / Bluebond-Langner, Myra / Fraser, Lorna K / Downing, Julia / Farsides, Bobbie / Murtagh, Fliss Em / Ellis-Smith, Clare / Harding, Richard

    Palliative medicine

    2024  Volume 38, Issue 4, Page(s) 471–484

    Abstract: Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is ... ...

    Abstract Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited.
    Aim: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions.
    Design: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research.
    Setting/participants: A total of
    Results: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional.
    Conclusions: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.
    MeSH term(s) Adult ; Child ; Humans ; Adolescent ; Cross-Sectional Studies ; Palliative Care ; Qualitative Research ; Caregivers ; Outcome Assessment, Health Care
    Language English
    Publishing date 2024-03-13
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241234797
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  10. Article ; Online: Cognitive testing of the Children's Palliative Outcome Scale (C-POS) with children, young people and their parents/carers.

    Coombes, Lucy / Braybrook, Debbie / Harðardóttir, Daney / Scott, Hannah May / Bristowe, Katherine / Ellis-Smith, Clare / Fraser, Lorna K / Downing, Julia / Bluebond-Langner, Myra / Murtagh, Fliss Em / Harding, Richard

    Palliative medicine

    2024  , Page(s) 2692163241248735

    Abstract: Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing. ...

    Abstract Background: The Children's Palliative Outcome Scale (C-POS) is being developed using best methodological guidance on outcome measure development, This recommends cognitive testing, an established method of item improvement, prior to psychometric testing.
    Aim: To cognitively test C-POS within the target population to establish comprehensibility, comprehensiveness, relevance and acceptability.
    Design: Cross-sectional cognitive interview study following COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology and Rothrock guidance on outcome measure development. Cognitive interviews were conducted using 'think aloud' and verbal probing techniques.
    Setting/participants: Children 5-⩽17 years old with life-limiting conditions and parents/carers of children with life-limiting conditions were recruited from 14 UK sites.
    Results: Forty-eight individuals participated (36 parents; 12 children) in cognitively testing the five versions of C-POS over two to seven rounds. Content and length were acceptable, and all questions were considered important. Refinements were made to parent/carer versions to be inclusive of non-verbal children such as changing 'share' to 'express' feelings; and 'being able to ask questions' to 'having the appropriate information'. Changes to improve comprehensibility of items such as 'living life to the fullest' were also made. Parents reported that completing an outcome measure can be distressing but this is anticipated and that being asked is important.
    Conclusion: Cognitive interviewing has facilitated refinement of the C-POS, especially for non-verbal children who represent a large proportion of those with a life-limiting condition. This study has enhanced the face and content validity of the measure and provided preliminary evidence for acceptability for use in routine practice.
    Language English
    Publishing date 2024-05-06
    Publishing country England
    Document type Journal Article
    ZDB-ID 639247-7
    ISSN 1477-030X ; 0269-2163
    ISSN (online) 1477-030X
    ISSN 0269-2163
    DOI 10.1177/02692163241248735
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